August 19, 2014 (Barely). It’s amazing how quickly time flies. It’s been an entire year since I posted last. Today marks my fourth anniversary of being diangosed with CML. I am still in technical “remission.”

I am still taking Sprycel. However, my dosage has been reduced from 100 mg per day to 50 mg per day. I am hopeful that eventually I can reduce the dosage even further. Sprycel is a great drug. I’m grateful that it’s available. The drug doesn’t come without issues though. Fatigue and “chemo brain” have factored into the mix. I am grateful though for having it and for still being around. Happy new year. And maybe I’ll check in again before August 19, 2015.

How time flies. I haven’t posted in a while. Today (August 19th) marks my three-year “cancerversary.” Hard to believe that is has been three years since I received the “official” diagnosis that I had cancer.

Today also marks the date that I am officially living on borrowed time.

As an update, I am still in “remission” having undetectable levels of the naughty cancer gene. I struggle day-to-day with the side effects of taking the Sprycel, but I’m still going.

Hello and Happy 2013. It’s been a while since I last posted. This is mainly because I haven’t had anything to post. Well…

The news from most recent PCR is that I have lost my molecular response. The b3a2 fusion gene transcript found in chronic myelogenous leukemia was detected. What does this mean? It means that the CML gene is replicating again. Put in English, I am technically no longer in remission.

Before you start freaking out, the level of this transcript present at diagnosis was 52%. The amount detected on this current blood draw is seven tenths of one percent (0.7%).

The bigger question is, why? I have been taking Sprycel for over a year now. I’ve been in a major molecular response for over a year. My doctor has drawn additional blood to check for gene mutations, but for now I think the reason for the change is a Drug-Drug interaction. Possibly, a 10 cent ant-acid pill brought down a $275 cancer drug. I have some acid reflux and take Tums for it. I believe I have been taking this too close to my Sprycel dose.

I have Tums at work, at home and in the car. I take around 20 tablets a day. I’ve used this opportunity to ask myself why I am taking so much Tums?!?! Well, I’ve taken the advice of two of my doctors and have cut out the diet soda. And, so far (it’s been a week) I can say the reflux seems to be much better. Diet Dr. Pepper, I miss will (yes, the photo is of Diet Coke, I couldn’t find one of Dr. Pepper).

I will continue to take the Sprycel for now. In about three weeks we will recheck the PCR to see if the numbers are headed back down.

Tomorrow will be my two-year anniversary since being diagnosed with Chronic Myloid Leukemia (CML).

Storefront Window of a Closed Business in Brooklyn, NY

It has been quite a while since I last posted. Time flies when you’re having fun. Hmm.

The long story short is that I am in remission. My last two PCR tests resulted in undetectable levels of the BCR-Abl gene. So, I take my pill and go about living. There are side effects, such as continuing energy issues and head aches. It’s a small price to pay. I am just happy to have a “normal” life. The life expectancy for people with CML is about 4-5 years. That was the case until the introduction of Gleevec. Now, the life expectancy is, if the CML is caught early, around that of the general population. So, I’ll be around for many years to come.

Okay, so perhaps “Everyone that has Cancer” is too broad a group. I probably can’t speak for the 1,638,910 million people newly diagnosed with all forms of cancer this year and the 11.7+ million living with cancer (or more appropriately who have cancer living with them).

So here it is…

If you friend (family member, co-worker, etc.) is diagnosed with cancer don’t treat them differently. Don’t treat them like glass. Don’t pull away. Many people have trouble deciding on what to say. Our society is conditioned to be fairly afraid of the “c” word. They don’t want to say the wrong thing. The fear is paralyzing. So, they end up not saying anything.

What is the right thing to say?

Pretty much anything.” Keep in mind the person with cancer is new to this too. Some people may respond to humor (like myself). Other people just want to know that friends are still there. Many people say, “I am thinking of you,” “You’re in my prayers,” “Let me know if there is anything I can do.” Even these cliché messages are better than saying nothing. So, if you say nothing else, say “I’m thinking of you. Let me know if there’s anything I can do.” And follow-up.

I don’t know so much time has passed. I went from one project (local) to another project (New York City). Overall I have been working A LOT of hours. And my blog has suffered. The good news is I am still alive. And more than just being “alive” is that I am officially experiencing a “major response” (aka: the CML version of remission). I’ve achieved a 3 LOG reduction on my most recent PCR test. The new medication – Sprycel – is doing a great job. Long term prospects are looking good.

So, as I alluded to above, I am working in New York City working on a very interesting banking project. I am on a 4-month assignment here. I travel home on the weekends. It is actually pretty amazing, medically that is. A year ago working this type of schedule would have been impossible for me – heck, back then I was just focusing on getting out of bed and driving to work. How things change.

There have been challenges. Mainly it has been very hard on my wife – who is basically a single parent during the week – and my kids who miss me and ask where I am. In November, the week before Thanksgiving, our home was broken into. We lost several items, including computers and jewelry. Most dastardly the thieves made off with the Christmas presents we had purchased for our boys. Many people have been very kind and have helped us. Mankind can be especially wonderful at times. I am also a BIG fan of Target because of the way they handled a customer service call related to the theft of a package from the break-in.

Overall, I have much to be Thankful for. Health, Family, Spirituality and Employment. Pretty damn good.

It took just 9 weeks for the CML to start reproducing while I was on the medication “holiday.” If I was close to remission, it is now back in the distant horizon. It took just a few weeks time to erase several months of gains. I feel as if I am starting over. I’m not all the way back to the beginning – maybe 10 steps forward and 3 steps back. Still, it’s a good reminder of the reason why I (and others with CML) must take the medication daily … probably for the rest of our lives. It’s the only thing, short of a bone marrow transplant that will keep the CML under control.

I received the Sprycel today. My cost: $13.33. Insurance: $8,000. Quite a bargain. Today I am especially grateful for insurance. So, I start the medication tomorrow (Saturday, May 28th). Here’s to new beginnings. Cheers!